Sunday, June 15, 2014

Recalling the Potassium overdose, a year ago: Kayli had some pre operative blood work done for her spine surgeries. We got a call from the hospital, because her Potassium level came back at a critically low, 1.7 (life sustaining/safe levels are between 3.5-5). She was on the Ketogenic Diet, and because she wasn't managed well in any of the 3 Ketogenic clinics, she was starving and even suffered de-compensated heart failure in the recent past. When we received the call, we were at the nail salon getting her nails done for the first time (and marking it off her bucket list), for her upcoming Celebration of LIfe (bday party). We were already having a challenging day, because Kayli was discriminated against at the first nail salon (they refused to treat her while in her wheelchair). As advised, we took Kayli into the ER for a "K rider" (an IV dose of Potassium) to quickly get her critical Potassium level up. If the Potassium level is too low or too high, it can cause a heart to stop. Potassium is an electrolyte, and this is why a person's heart can stop when they are dehydrated (the Potassium/electrolyte level is too low). While in the ER, Kayli's Ketogenic dietician and neurologist spoke with the ER dr and they advised us to give Kayli otc (over the counter) Potassium supplements and Morton's Lite Salt to keep her levels up. The next day, we gave her the newly ordered supplements, and within minutes Kayli went into convulsions and her heart rate was over 200 bpm (beat per minute). Her eyes rolled, and she started having diarrhea. We called 911, and by the time they arrived, just 3 minutes later, Kayli was incoherent, pooping, and her heart rate was up to 280 bpm and then dropping to 38 bpm! She was sure to go into cardiac arrest! When we arrived at the ER with her, she had been stooling (diarrhea) for half an hour straight, and her heart rate was all over the place. The cardiologist refused to see her in the ER (he thought she was a lost cause), even as the nurse yelled out to him, standing just feet away from Kayli's ER room! The ER dr came in and ordered blood work after I told him that Kayli had taken some newly prescribed Potassium supplements. The Pediatrician on call came in and was shaking his head (also thinking Kayli would not make it through this). Kayli continued to have convulsions, eyes rolled back, entire body shaking, and stooling. Her heart rate well into the 300's now, and dropping frequently to the 20's and 30's. We were told she would go into cardiac arrest (they were surprised she wasn't yet), and she would not make it out of cardiac arrest. The blood work came back, and I overheard the ER dr speaking with the Pediatrician..."her Potassium level is 8". I jumped into the conversation, saying "what does that mean"? I knew it was high, but I wanted to know what that meant for treatment. The dr's brought their heads down, looking to the ground and said "that's incompatible with life...she is dying and won't make it through this". I'd heard incompatible with life before, the first time, to describe Kayli (because she has Trisomy 18). This time, the dr's were saying her condition was incompatible with life. I told the dr's I understand it isn't looking good, but that they needed to TRY to help her! She's survived "incompatible with life" before! The nurse who never left Kayli's side, had already put the paddles on her, and explained what they could do to try to help Kayli. The nurses and dr's said it is unlikely to survive levels in the 7 range, and they've never seen someone in the 8's range survive..... Kayli was in V-tach (the top of her heart stopped beating, and the bottom quivered) and was expected to go into cardiac arrest and die before our eyes on the ER table..... The dr's gave her some meds, but they weren't working. Kayli's levels were still too high, and weren't coming down. The dr's said they can give one more round of meds, but that was all they could do for Kayli. She will die. There is nothing more they would be able to do for her. That's when I pushed past the nurse by Kayli's side, to be with my daughter. With a lump of panic in my throat, and tears streaming down my face, I looked into Kayli's eyes to see if she was ready to go (be with our Lord and Savior). She had a blank stare on her face. Instead of seeing Kayli's soul like I did when she passed away for 32 minutes (at 4 months old), I saw a shell of a body. That was it. Her soul was gone, and she was a confused, lost little girl. That's when it hit me. Kayli did not know what was happening to her! She is not in her body, and her soul was nowhere to be seen. How would she know she was dead, if she wasn't present for her death?!!! Kayli left her body so that she was not suffering, but I just couldn't let her go without HER making the choice to die! For the first time in her 4 years of life, I begged for Kayli to come back to me. I begged her to stay with me, and not leave me! I wanted HER to make the conscious choice, and I wanted her death to be peaceful (like it was the first time)! I didn't want her to suffer, but at the same time I knew Kayli wasn't there to talk to...to decide if she was ready to go or not. I leaned into her, with my heavy heart that seemed to come out through my mouth, I put my trembling lips on her ear, and begged. I begged her to come back to me, even if just to say goodbye. My tears filled her ear, like a lake overflowing after a heavy rain storm. I begged her to come back just long enough to decide for herself. I told her that she doesn't have to stay long, but I NEEDED her to come back to me. And...she did. Her eyes filled with her spirit again! She was scared, but she was there with me. I cried and told her I'm scared too, and it's ok because we're in this together. I told her what happened, and how bad it was. I told her we aren't giving up on her, and no matter how bad she's hurting right now she is not alone. She will never be alone. I asked her to trust in me. I begged her to stay with me, and fight to get better. I told her I know she doesn't understand right now, but that I needed her to trust me and stay with me until she could understand what was happening. I asked Kayli to slow down her heart rate. At that moment, Kayli's heart rate began to drop down a little. Kayli was trusting me! I cheered her on. Her nurse saw her heart rate dropping, and cheered her on too. We cried, and laughed because our emotions were all over the place. I was relieved that Kayli was responding to me, and was trusting me. Kayli's heart rate continued to come down, as my tears of joy and praises of God enveloped her little quivering body. Kayli's status became "unstably stable". That meant there was no telling when the next heart beat would be, but there was a suggestion of a promising trend. Flight for life was called, and the plan was to transfer Kayli in the unstably stable condition, to better equipped hospital. Kayli ended up being transported by a critical care team via ambulance instead. She was not expected to survive the transport, but she did! Kayli continued to get better, in the new PICU (pediatric intensive care unit), but there was something different about her. The next day, her heart rate was stable, and she had survived the impossible!! Or so we thought. As the days went on, we noticed Kayli was inconsolable. She cried ALL the time, and wailed even harder if we talked to her or tried to comfort her, or hold her. Kayli had no idea who were were! Of all the heartache in Kayli's journey, this was the hardest to take. Kayli was alive, but no longer knew of our love for her. She was scared, and lonely. I questioned my decision to beg her to stay with us. My daughter was still here with me, but she didn't know love. What kind of life is it, if you don't know of love? Kayli feared me, and all those around her who love her. Her nurses were in tears, and were heartbroken. We all grieved Kayli's life as we knew it. We just wanted our Kayli back. As the weeks went on, we continued to hold her, even as our tears fell and she cried. Eventually, Kayli tired of crying, and tolerated our love. She wasn't happy, and she didn't know who we were, but she tolerated our unconditional love for her. Then we noticed Kayli would awake from her sleep in what we thought were seizures. But the seizures were strange, because when we talked to Kayli during them, she seemed to keep from going into the seizures. We learned to cope with our "new" Kayli, and support her in every way we could. In time (months), Kayli learned to trust us again, and embraced our love for her. A year later, she now completely trusts us, loves us back, and shows happiness and joy in her life. 6 months or so after the Potassium overdose, Kayli was diagnosed with Hyperekplexia, aka Startle Syndrome. Basically, she has an exaggerated scare response and wakes up as if having night terrors. I imagine it's because her brain was affected from the extreme Potassium levels. Hyperekplexia does not affect her brain like seizures would. In fact, other than feeling startled, it has no affect on her. Once the startle stops, Kayli is completely "herself" again. As time has gone on, Kayli's Hyperekplexia appears to be decreasing. She is in reflex therapy in hopes of calming, and bringing her out of her new condition. Kayli faced death for the 8th time in her short life, and God granted her another miracle of life! We often ask ourselves, "Why Me?". "What did we ever do to deserve this life with Kayli?" Not because we are frustrated, angry, nor burdened with Kayli, but because we are truly Blessed. God is good ALL the time. Through all life's trials and tribulations, He shows us the glory. When you feel you are drowning in life, don't worry, your lifeguard walks on water.

Kayli's Story

Kayli was born with Trisomy 18, otherwise known as Edwards Syndrome. Kayli has been granted 8 miracles of life! The miracles include surviving: Full Trisomy 18, 32 minutes of anoxia, 7 weeks of Endocarditis and Sepsis without antibiotics, a perforated bowel, a surgically misplaced Gtube for 3 weeks, a pinhole sized airway for 3 weeks (resulted in a tracheostomy), a heart med overdose (10X the amount of Clonidine), a Potassium level of 8.2 (range is 3.5-5).
Kayli has 3 older brothers, each with their own, rare disabilities.
Claim'er: Although Kayli's pictures, videos, and information are public, it shall never be used against her. It is not permitted to use Kayli's information, videos, nor pictures, for sale or profit in any way. Kayli's Krusade is to openly share hope, knowledge, resources, acceptance, faith, and to spread God's testimony of Love. You are welcome to share her story with others, as long as the intent is for her purposes, and done with respect for Kayli, our child of God. ♥